Do you have a disabled child and feel like you are in over your head? I understand that feeling, but don’t worry. There are many different types of disabilities, and depending on what type your child has, there might be certain things you can do to make his or her life just a little bit easier.
It can be incredibly difficult to care for a disabled child. As parents, we want the best for our kids and sometimes that means sacrificing some of our own needs in order to help them get what they need. However, there are many ways you can provide your child with the care they need while still making sure you go out on occasion and take care of yourself as well.
Raising or caring for a child with special needs is far from easy. However, along with the frustration and feelings of isolation comes the incredibly rewarding experience of watching your child grow, learn, and achieve new milestones—even if they are sometimes delayed.
It’s important to realize that you don’t have to get through the rough patches alone. There are support groups, other parents of special needs children, and disability services for children that you can access.
Whether you turn to a doctor, a friend, a family member, a church group, or another community, there are so many resources available to help you tackle what sometimes can feel like an insurmountable task. To help, we’ve compiled a list of some of our favorite tips for caring for a child with disabilities.
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Understand the Diagnosis
You need to have a crystal clear understanding of your child’s diagnosis. Read, research, ask questions, and take notes that you can refer back to later. Your child’s doctor is an excellent source.
The internet has a wealth of information, too, but make sure that you are getting it from verified and trusted sources.
Anything with a “.org” or “.gov” is a good place to start.
Ask yourself these questions as you research your child’s condition:
- What are the symptoms, side-effects, and complications associated with this diagnosis?
- How will this diagnosis impact my child’s development and ability to care for themselves?
- What treatments are available for this diagnosis?
- Are they research-backed and thoroughly tested?
- Are they covered by insurance/Medicaid?
- What modifications can I make to my home or my lifestyle that will benefit my child?
- Is there any medication, treatment, or equipment I can pursue to make my child more comfortable and enrich their life?
One way to check your understanding is to explain it to yourself as you would to a young child. If you can’t break down the diagnosis into its simplest terms, you may not have a complete grasp of it.
Additionally, many children often have more than one diagnosis. Make sure you understand each one, including how they may impact or interact with one another.
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Know Your Caregiving Team Lead
Other than yourself or your spouse, who is the lead on your child’s care? Is it your child’s pediatrician, therapist, or caseworker?
Whoever it is, you need to know and have an open line of communication with the person who will review all the tests, treatments, and medications, and help you put the puzzle pieces of the bigger picture together.
Obviously, as your child’s primary caregiver, you will also need to have a handle on these pieces. However, you cannot interpret the medical tests, psychological evaluations, etc., alone. You need a healthcare professional who can see and understand the care plan in its entirety.
Once you know who your champion is, don’t assume that they know what their role is. Talk to them about it and make sure that you’re on the same page. Make sure you have their buy-in—if they don’t want to be your team captain, you’ll need to find another provider.
Understand Your Child’s Special Needs
This is different from understanding your child’s diagnosis. Knowing why they act, look, or move the way they do is not the same as knowing how to help. Ask yourself, “What are the main issues my child is facing?”
Their special needs can manifest in several ways: difficulty with changes in routine, fear of physical contact, dislike of loud noises, need for extra time in school, inability to complete certain physical tasks, and more. Identifying their needs helps you—and everyone you and your child interact with—understand the unique challenges they face, regardless of their diagnosis.
Speech therapy, physical therapy, and occupational therapy for children with disabilities can all help you to meet your child’s individual needs. Remember—you are not alone. Knowledge is power, and the more you know about your child and their special needs, the easier it will be to meet those needs and help them thrive.
Identify Your Strengths
We all have our strengths and our weaknesses. To our kids, we may appear superhuman, but we are all too aware that we’re just people. But, that’s okay; it’s okay to not get everything right the first time. Grant yourself a little grace, and try to focus on how you can best help and support your child.
Maybe you have a knack for helping with speech therapy or coming up with creative motor skills activities. Maybe you’re able to understand complex medical information. Maybe you’re someone who never gives up, and it makes you an excellent advocate for your child.
Maybe your gift is being able to calm a tantrum or see exactly what your child is trying to communicate. Whatever your strengths may be, be honest about them and throw yourself into those activities.
But, what about your weaknesses? Maybe you’re intimidated by doctors, you freeze when your child has a meltdown, or you’re easily frustrated by medical and legal jargon.
Don’t worry—you’re only human. These are just areas where you could use a little extra help. This is when you reach out to those support systems we mentioned before.
Try to fill in your weak spots with strategies, services, and supplemental caregivers. For example, if you have trouble loading and unloading the car with your child’s wheelchair or other mobility devices, consider transportation services.
If you know you have a hard time keeping up at the doctor’s office, record your appointments so you can listen back to the doctor’s comments about the diagnosis and treatment options. Take small steps to strengthen yourself in areas that can use improvement, and don’t be afraid to ask for outside help.
Don’t Try To Do It Alone
We’ve mentioned this in several other sections, but it’s so important we decided to give it its own number. You do not have to do this alone. We know it can be difficult to admit the depth of your child’s difficulty—and the difficulty you have dealing with it. But admitting these things can be the first step in getting support for them.
Be honest about your child’s challenges and needs so the people around you can see what you’re going through. They can’t help if they don’t understand the depth of the challenge you’re facing. If family and friends don’t fully understand (which can happen), join a support group in your area, or find one online.
Other caregivers of kids with special needs understand exactly how you feel and know the challenges you face. Often they can offer advice and tips for making your and your child’s life easier.
Looking after yourselves and your relationship
It’s easy to get caught up in looking after your child’s needs, but looking after yourselves is important too.
Part of looking after yourself is finding time to do things you’re interested in – as individuals and as a couple. It might be sport, music or social groups. A bit of time out helps you feel good – and when you feel good yourself, you’ve got more energy to put into your relationship.
Raising children is a big job for anyone, and raising a child with additional needs can mean an even bigger workload. You and your partner don’t have to do the same things, but sharing the overall workload of child care, domestic chores and paid work is important.
You could think about doing a weekly chart of chores and responsibilities to make sure things are fair. This can also help you make time each week for yourselves.
Talking openly about your feelings is important. Using ‘I’ statements can help you do this – for example, ‘I feel as though …’, or ‘I wonder if we could do this differently’.
And listening to each other without blame or judgment helps you give each other emotional support. When you’re talking about difficult issues, you can show you’re listening by saying things like ‘I understand what you mean’, or ‘I didn’t realise you felt that way’.
Feeding and eating
A disabled child may have problems with feeding and eating for many different reasons, such as:
- physical problems that cause difficulty swallowing, chewing, sucking or digesting certain foods
- limited mobility, which might make it difficult to sit up to eat or drink
- a learning disability
It might take longer for your child to be able to feed themselves, but developing the skills to do so can also help them in other ways, such as with speech and language development and coordination.
Your health visitor can advise you on many aspects of feeding and weaning your baby.
As your child grows, you might be able to get a referral from your GP or health visitor for specialist help.
This could include:
- a speech and language therapist – to help with physical issues like chewing and swallowing
- an occupational therapist – to advise you about aids that might help your child, such as special plates, bowls, cups, adapted cutlery or non-slip mats
- a physiotherapist or occupational therapist – to advise you on getting your child into the right physical position to eat
- a dietitian – to help you if you’re concerned that your child isn’t eating enough
If your child needs to be fed through a tube that goes directly into their stomach, you can get advice from the support group PINNT (Patients on Intravenous and Naso-gastric and Nutrition Therapy).
These issues can take a toll on your own wellbeing. If you’re feeling isolated, you may find it helpful to search for Carers emotional support services in your area.
Routines and children with disability
- Routines help family members know who should do what, when, in what order and how often.
- Family routines help children feel safe and secure. For children with disability, routines can also be a way to develop new skills.
- Good routines suit you, your child and your situation. It’s also good if routines can be flexible when your circumstances change.
Routines are how families organise themselves to get things done, spend time together and have fun. Every family has its own unique routines. Routines help family members know who should do what, when, in what order and how often.
Some routines might be for things you do every day – for example, getting ready for bed. These routines might involve things like having a bath, putting on pyjamas, brushing teeth, going to the toilet, reading a story and going to sleep. You do these in the same order each day.
Other routines can be weekly or occasional ones. Examples might be going to the park a few times a week, going to playgroup on Tuesdays, or doing the shopping on Wednesdays.
There’s no rule about how many or what kind of routines you should have. What works well for one family might be too strict and structured for another.
Why routines are good for children with disability
An organised and predictable home environment helps children feel safe and secure, including children with disability. Routines can be especially helpful when things are stressful or when children are going through difficult stages or experiences.
Also, if your child with disability needs to take medicine or do other medical procedures regularly, a routine for this will make it easier for both of you to remember.
And family routines can also be a way for your child with disability to develop new skills. For example, if your child has a goal to work on communication skills and taking turns, you could remind him a few times during dinner that it’s his turn to talk about what happened at kindergarten.
If your child has complex needs, you might need to carry out most of her routine care. But your child will still enjoy and benefit from being part of your daily routines.
Routines can be good for you too. They can free up time for you to think about other things and help you feel more organised. You can also use routines to introduce fun family activities like games nights or reading books together. Activities like these are good for relaxed family bonding and togetherness.
What makes a good routine?
Just like typically developing children, some children with disability like and need routine more than others. So the best routines will be the ones that suit you and your child, and that make your daily family life easier.
Effective routines also generally share three key features. These routines are:
- well planned – good routines are clear, and everyone in the family understands their role and knows what they need to do
- regular – good routines become part of everyday family life
- predictable – in a good routine, things happen in the same order each time.
Once you’ve got some routines happening, getting together as a family to talk about how your routines are going can keep everything running smoothly.
For example, if your morning routine isn’t going well, you could ask, ‘What’s going wrong? How do you think we can fix it?’ Even young children will enjoy brainstorming ideas. It’s also a good way for them to practise problem-solving skills. You could also talk about how each person feels when your routines run smoothly and when they don’t.
What works well for a child or a family at one point in time might not be the best at other times. Circumstances change and unexpected things come up, so you might need to be flexible – for example, if your child isn’t well or hasn’t slept well, or you go on holiday. You might find after a break that you need to bring your routines back in gradually.
A break from routine can be good too – children with disability can enjoy spontaneity and fun just as all children do.
Talking about routines with other people
You could ask your child’s early intervention professionals about their tips for creating successful routines. They might be able to help you build learning opportunities into your routines.
Other people who care for your child will probably appreciate knowing about your routines – for example, friends, family or the staff at your child’s early childhood centre.
Helping your child follow routines
You can help your child with disability take part in family routines.
It can be as simple as using touch and voice cues – for example, touching your child on the upper arm and using his name to remind him to finish clearing the table.